To follow World Psoriasis Day on 29th October, the ISF held a series of roundtable meetings for people affected by psoriasis during November. We held meetings attended by about 50-60 people in Waterford, Galway, Limerick and Athlone, asking people to break up into small groups of under 10 people.
Five speakers (a dermatologist, a dermatology nurse, a motivational speaker and a health & fitness expert and the ISF’s psoriasis advocate Caroline Irwin) addressed the meetings and took questions. The roundtable meeting’s relaxed format allowed for easy conversation and provided an opportunity to ask questions about psoriasis, or to just listen.
Chatting with a consultant dermatologist
After a brief introductory talk, each speaker spent 20 minutes with individual groups providing an opportunity to sit face-to-face with a local consultant dermatologist (to talk about new treatments available for psoriasis) and a dermatology nurse specialist (to refresh and top up on the dos-and-don’ts of the self-management of psoriasis) and to talk and learn about positive mental attitudes, and hints and tips for a healthy body and mind-set.
Take-away insights from nationwide meeting
“The people who attended the meetings were really encouraged by getting to meet and listen to other people’s experiences of psoriasis, to ask questions, to make a contribution themselves”, said the ISF’s David McMahon. “I think a lot of eyes were opened about treatments options, management and coping with the burden of psoriasis”.
“We were particularly happy to see so many men attend and to have people of all ages, family members and friends to come along as supporters.”
“On the negative side, several people expressed frustration that they had been trying the same treatments for years but were getting nowhere or that some of their GPs didn’t know about certain treatments only available through hospital dermatology clinics. The high out-of-pocket costs of managing psoriasis and the long waiting times for hospital appointments in some parts of the country can cause a lot of worry and distress”, he said.
More community support needed
Caroline Irwin told her own story to each group, about developing psoriasis when young, the challenges of growing up with it and how she decided to take control in her 20s. “I met with lots of people who feel really isolated and alone in dealing with psoriasis – I really think we need more community, to meet each other more regularly and just be there for each other for support and to talk. It’s really important to meet other people with psoriasis, to listen and be heard yourself, with other people who understand.”
Caroline Irwin offers peer-to-peer support to people with psoriasis through the ISF Helpline and the meetings were kindly supported by Novartis.
We would also like to thank all of our speakers and to Pat Divilly in particular for giving all attendees a free copy of his book Upgrade your Life: how to take back control and achieve your goals.